THERE'LL ALWAYS BE A WAY!

March 13 2017 09:15 AM

Rare Disease & Syndrome

Dike Chima

Life Is Beautiful

So, I have had 4 different diagnoses since it all started 13 years ago.

1. I was told it was an orthopaedic case (had to do with my bones) - 20042. It became a neurological case (had to do with my brain) but turned out to be wrong after some tests - 20073. It then became (limb girdle) muscular dystrophy - 2007 & 2009 (from 2 different hospitals in 2 different states)4. After doing some online research and was convinced that it's CMT, I visited another hospital and it was confirmed that it's Charcot-Marie-Tooth disease.

I was born normal. But somewhere along the line, everyone (except me) noticed that there was something wrong with the way I walked, and that's when the hospital journeys began. From muscular dystrophy to CMT, I was always told that they were hereditary, while no one in all of my extended family has/had it.. CMT has affected my legs and hands (usually, most people only see the legs because there's a wheelchair) and gradually, I couldn't do a lot of things that I used to (especially with my hands) but I still write as superbly as ever.

I started off with a pair of crutches (in 2009) and then a wheelchair (2011) -which I didn't like, because I hated the idea of being referred to as "the girl in the wheelchair" (some people didn't even know my name) and I was so shy.. It wasn't how I had hoped my life would turn out. College was kinda rough but on so many occasions, God favoured me and I was able to scale through.. I had to depend on different and unpredictable people with different characters and from different backgrounds. And then, the ups and downs that come with being a wheelchair user in a developing country.. A lot of times, I don't get to do the things I love doing so much -like travelling, hanging out with friends, going for events/programs, acting/presenting, etc- but I'm a happy lady (the world knows that.. lol) and I'm happy for the things I can do. I'm grateful for the friends/caretakers I've had over the years (so many have come and played their parts), and how they've been able to put up with my excesses and annoying perfectionism.

My family members have been very supportive thus far. I'm the 3rd of 5 children, and if my first 2 siblings are not available, at least one of the last two is always available. I doff my hat for them always (and for those who take care of special people like me) cos this job ain't no easy one. A lot of people always asked me how I'm going to (or how I) cope, and my catchphrase has always been (and still is), "There'll ALWAYS be a way". While I say this all the time, I'm never in doubt about it. In the course of this journey, I've had because to laugh, smile, cry, be depressed, be bored, feel normal and abnormal at the same time, feel inferior, loved, sad, happy, dependent, limited, free, but in all, I came out of the furnace stronger..

It was only recently that I came to accept things for what they really are - not out of defeat, but out of the desire to use it as a propelling force to make my way through. I know God's got me, and so I'm gonna stay and fight it through to the end. P.S: I'm the one who has to sit in a chair (to take photos) while my siblings/friends surround me like I'm 'the birthday girl', lol... In all, I can only say that life is beautiful.. Because I've learned not to break my head over things I can't change..